Meeting the Challenges of Long-Distance Caregiving

by Lazelle E. Benefield, PhD, RN, FAAN

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“My mother lives 400 miles away, and I miss opportunities to visit with her. This means I also miss opportunities to accompany her to doctors’ visits and be with her as she receives chemotherapy treatment.”

Family and friends who live a distance from a loved one with cancer often find it challenging to provide the right mix of care, support, and guidance. With families increasingly being separated by geographic distance, more and more long-distance family members are becoming “caregivers.” The challenge they face is identifying exactly how to provide support and assistance without the benefit of being physically present. Managing priorities calmly and efficiently across geographic distance can be taxing.

To meet the challenges of long-distance caregiving, acknowledge what we already know – being a friend or family member of someone with cancer involves YOU in an important social role. Your chief responsibility is to offer comfort and to stay in touch. If you are helping to manage or monitor healthcare decisions, finances, and/or social support systems, you have an additional role as caregiver-at-a-distance.

Consider the following tips to help you stay in the loop:
Gather resources. Order So Far Away: Twenty Questions for Long-Distance Caregivers, published by the National Institute on Aging, or download it free at www.nia.nih.gov/HealthInformation/Publications/LongDistanceCaregiving. Organized in a question-and-answer format, the booklet provides resources and ideas specifically related to caregiving from a distance.

Consider using Web-based community calendars, such as LotsaHelpingHands.com, to organize support for the person with cancer.

Author of Article photo

Dr. Lazelle Benefield

Talk with friends who have similar experiences of caregiving from a distance. Ask for tips on how to stay in touch and how to monitor care and treatment plans while not being physically present.

Talk with your loved one, preferably in person, to determine how he or she wants you to assist. This is an especially difficult conversation if the person wants no help, and even more challenging if he or she is unaware that you are currently assisting in less overt ways. Honor your loved one’s wishes, and balance your desire to know medical details with the social reality of the situation. Expect weighty conversations to occur over several visits or phone calls.

Your loved one’s wishes may evolve as time goes by. Decide whether you are able to do what is requested. Being a voice of comfort over the phone is one thing; investigating local services and coordinating among other family members and friends is quite another. Consider how the larger network of support is, or should be, involved.

As appropriate, and with the consent of your loved one, develop a working relationship with his or her healthcare provider. Again, as appropriate, ask your loved one to include you among those who can receive medical information from the healthcare provider. Schedule an in-person, telephone, or online meeting with the healthcare provider, you, and your loved one to review and update his or her health status.

Consider using Web-based group calendars, such as LotsaHelpingHands.com, to organize support for the person with cancer. These free, private group calendars provide a method to coordinate activities like driving to appointments, shopping, or meal preparation among family, friends, and other volunteers. This goes a long way toward keeping everyone updated without having to repeat conversations and can be useful to people with cancer who want to post updates in their own words.

Gather all relevant contacts, including telephone numbers and e-mail addresses, in a format you can carry with you. Enter this into your mobile phone, add it to your e-mail contacts list, or write it down in a small notebook so that the information is easily accessible.

Continue to value the importance of communication between you and your loved one with cancer. Keep in touch regularly by phone, mail, online communication tools (Skype, IM, Facebook, or another virtual connection), or in-person visits. Within the context of time available, commit genuine attention to the moment and the connection.

Find ways to bridge the distance.
Don’t fret about not being able to always be there; you can still offer invaluable support. A long-distance caregiver sums it up: “My sister lives locally and visits Mom often. However, I live far away and contribute by mailing Mom a postcard each day, describing the routine activities of daily life. I also call Mom several times a week, and in the last year, have taken to visiting every six weeks. Though in the overall scheme of all these actions, my sister reports that Mom’s postcard arriving by mail is the high point in her day.”

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Dr. Lazelle Benefield is professor and Parry Endowed Chair in Gerontological Nursing and director of the Reynolds Center of Geriatric Nursing Excellence at the University of Oklahoma Health Sciences Center in Oklahoma City, OK.

This article was published in Coping® with Cancer magazine, November/December 2009.